Fatigue 7 months post VM

[Gm23]

I was hospitalised in June for 9 days due to VM. Ever since I have had periods of extreme exhaustion to the point my whole body hurts and I cannot leave bed. I am still not over being muddled up, confusing my words and unable to concentrate, it actually feels worse than ever. A doctor friend has suggested this may be Chronic Fatigue/ME. Has anyone else suffered something similar and had a diagnosis?

[Starry]

Yes. I had vm July before last. I was diagnosed with ME in September last year. I kept trying to push through and unfortunately caused my ME to progress. There are benefits to early diagnosis so Id recommend that you ask your GP to refer you to the local ME-CFS specialist service

meassociation.org.uk/about/...

VM is a known trigger for ME, though in my case there was a note of Pvfs in my medical records dating back to glandular fever aged 20 which I was unaware of.

Pacing is helpful in preventing worsening of symptoms and there is a good guide on action for me

actionforme.org.uk/living-w...

Avoid GET which can be very harmful. Cbt does not treat the condition but can help manage the nental coming to terms process or any associated very understandable depression.

Feel free to pm me.

[Barbaustralia in reply to Starry]

Yeah psychology unhelpful

[Barbaustralia in reply to Barbaustralia]

I find pressure to be positive very stressful and assumptions you can do mind over matter destroying confidence

[M050618 in reply to Barbaustralia]

I completely agree. My husband is always telling me I’m sick bc of my mind or something and that if I think positive I will feel better. Maybe he’s right... but I really try and try to be positive. What medications have you all taken to help with the fatigue and the pain?

[Barbaustralia in reply to M050618]

I take zomig for migraine and do acupuncture

[MadBolly]

I too was hospitalised last July with VM. I have since suffered with exhaustion, back pain and foggy brain. I have been seeing the Dr on a regular basis since, having bloods tested approx every 3rd week. In December, my bloods showed that my B12 levels are low. I was put on tablets and was asked to return to Dr last week. Still no improvement, in fact, I have been feeling worse. I am now receiving B12 injections and the Dr has sent a referral to the CFS specialist. I am now waiting for an appointment to come through. Apparently CFS/ME is quite common after a viral infection. Good luck.

[M050618 in reply to MadBolly]

I have been struggling with fatigue, backpain, arm pain (like growing pains in my arms) fatigue, migraines etc since hospitalized for VM in May 2018. I thought I was crazy and doctors think I’m complaining. No one seems to specialize in this and is reluctant to treat long term. I’m so frustrated.

[Kellzlucky7]

Yes, I was in the hospital 6 days from VM went home with a pic line for about 2 weeks. I was diagnosed with VM 3/1/2018 and nothing has really gotten better but it is livable. I still have severe headaches, nausea the chronic fatigue no matter what I do. I can only do about 3 to 4 hours of activity before I get exhausted. The other day I drove my son to school went to a 45 min session of pool therapy and then grocery shopping, the next day I was in bed sick all day exhausted. Don't let the doctors tell you nothing is wrong with you get 2nd opinions and you TELL THEM what is wrong with you. It is hard to get help when no one knows what your going through. And I will tell you what another VM survivor told me. When you say you want to feel normal or the way you used to just remember feeling normal is now diffrent from what you used to be. Find what helps. Take your vitamins, drink fluids, sleep, stay away from stress if you can it makes our symptoms worse. You are not alone and we are all here for reach other❤

[Sunny308]

I'm bedridden, severe fatigue, haven't left home in 5 months, getting worse over time Gott sick in July severe symptoms started in Sept

[Hexy]

They are specialist doctors out there, demand that your doctor makes you an appointment under, the duty of care!

Doctor's ? Are General Practitioners GO not specialist. Don't give in have another mri. Which will show scar tissues on the brain. Memory balance confusion frustration depression mixed emotions temper noise nuisance light sensitivity i could go on. You get the idea. Some people are worse than others. Can also change personality!!!!! As you have to remember your brain was on fire!!! I get upset very easily too. Not everyone understands. I had lost it notes everywhere noting what I'd just done, so I didn't forget. Not useful when it comes to conversations, forgetting. I had to learn so much before I understood.I read everything i could get my hands on and made notes, demanded the correct treatments when my doctor retired, it was a nightmare before the new idiot GO understood.now he does. So it was worth it. Keep doing only what you can. Step by step. Anita 😘

[Barbaustralia in reply to Hexy]

My GP is complete moron never diagnosed that I was totally unwell and suggested panic attack when it was early stages and I had no idea what was happening to me then she became really defensive angry inappropriately abusing me as ambulance officer called her on weekend

[bexiiee_b]

Hi, thanks for your post @gm23 and all the replies. Unfortunately what I'm going to comment won't help (sorry!). I had near fatal VM six years ago, I assumed that I had completely recovered from it, as I was told I would be. It's only now that I'm realising that the long term changes in my health are most likely due to the VM!

I was diagnosed with depression 11 years before the VM and always thought my symptoms were due to that. I've struggled with incredible exhaustion, some days I can barely move, I make spelling mistakes that I never before made, I get mentally exhausted and struggle to find words, and struggle with concentration. It's funny the comments mention growing pains, which I get in my hips and legs, but again, assumed this was connected to something else like period / ovulation pain (still could be).

Following a recent psychological trauma I now feel like everything has flared up again; I didn't realise how common these long term symptoms could be.

Does anyone have any advice on how to approach this and be taken seriously by a doctor? Are there even tests that can be done?

The complete exhaustion combined with the trauma and diagnosed "treatment resistant" depression is all becoming a bit much right now! I've been off work for the post three months and am beginning to think I'll never be able to work properly again!!

Thanks in advance for any comments or support.